Loreen Willenberg

Life as an Elite Controller

Bonnie Goldman was a remarkable human being who has left us to continue her good works in another sphere. She leaves a lasting legacy, not only in the form of this awesome website or her incredible articles and interviews with cutting-edge HIV-research scientists and people living with HIV, but through her acts of kindness, inspiration and mentorship, too. I am devastated by the news of her untimely death to yet another deadly-stalker: breast cancer. As I grieve her loss, my thoughts turn to celebrating the many wondrous ways Bonnie touched my life over the five short years we knew one another.

Opportunities to speak to mainstream media representatives about the wonder of HIV controllers are few and far between; when they do happen, they are typically oriented to the scientific perspective, and are rarely centered on the personal one. Imagine my surprise, then, when an invitation arrived to discuss my journey as an HIV controller from the personal point of view with Dr. Howard Gluss, a psychologist from Southern California, on his radio program called "Life With Dr. Howard Gluss."

Josh asks thoughtful questions throughout the hour-long interview and, with Bob Marley tunes as a backdrop (great choice, Josh!), we discuss a wide range of subjects that include basic information on how HIV works to dismantle the human immune system, how our immune systems fight infection, current therapies and novel approaches to therapies, therapeutic vaccine development, the recent revival of the 'cure' word, information on recent discoveries related to protective genetic markers and other control mechanisms within the HIV Controller and/or Long-Term Nonprogressor community, and the 'functional cure' we represent. At the end, I share the collective hope of my unique 'tribe' to contribute to the end of the AIDS epidemic. Originally entitled "Have You Heard of HIV Long-Term Nonprogressor?", this interview will be re-broadcast at noon on March 10, 2011, under the title "Have You Heard of HIV Controller?", in honor of the sixth annual National Women and Girls HIV/AIDS Awareness Day.

This blog entry wraps up my series of reports highlighting several abstracts presented at the XVIII AIDS Conference in Vienna on the most recent studies of "HIV Controllers (HCs)" and "Long Term Nonprogressors (LTNPs)" -- a unique group of HIV-positive individuals whose immune systems or genetic make-up contribute to remarkable suppression of the virus without aid of antiretroviral medications.

I was designated an "elite controller" of HIV in 2004, when few of us were identified and information on our spontaneous and mysterious control of the virus was hard to find. I had just passed the 12th anniversary of my diagnosis by then, and was extremely curious to know what was going on -- was I going to get sick, was I going to die? My own doctor, a specialist in HIV, could not give me an explanation, and Google searches on HCs or LTNPs were not productive either, because I tried.

This year marks two milestones for 1) the number of abstracts submitted for presentation on this subject, and 2) the number of international collaborating clinical research teams -- such as the "CASCADE Collaboration": team members from France, Italy, the Netherlands, the United Kingdom and the United States. The abstracts are representative of eight groups working together across many disciplines and institutions to unlock the mysteries of viral control. In fact, in the many years I've been following developments on this field, I've never seen as many abstracts or so many countries contribute -- last count was 16 -- to the body of knowledge being accumulated on the HC/LTNP group. It's tremendous!

As many of you may know, I am a publicly visible member of a small minority of HIV-positive people who control the virus in as-of-yet unexplained ways; we are called "HIV controllers" (HCs) and/or "long-term nonprogressors" (LTNPs). In addition to participation in 13 separate clinical research studies in the United States, I have established the Zephyr L.T.N.P. Foundation to link members of this community to studies, provide support services and to maintain the topic of HCs/LTNPs in the public view. As of today, only 1,725 of us have been identified worldwide, and each of us contributes valuable clues toward a better understanding of the human immune response to HIV. It is our collective hope that, through our contributions to science, we may help to advance the development of a therapeutic vaccine for HIV/AIDS, as well.

For many years now I have donated blood, cells and tissue to several clinical research studies on both coasts of the United States. I do so because I have an extraordinarily robust immune response against HIV infection. As I understand it, once these 'anti-HIV' responses are defined, there is a high probability my contributions to science may assist in the development of a therapeutic vaccine to treat people living with HIV/AIDS.

Not all HIV-positive people are alike in their ability to control HIV. An estimated 1 in 300 HIV-infected persons around the world have a mysterious ability to control their HIV. Their viral loads and CD4 T-cell counts remain in the normal range without their having to take any HIV medications. Researchers call these individuals "long-term non-progressors."

Loreen Willenberg, a resident of California, has survived HIV infection since 1992. She is part of a tiny group of people with HIV that scientists call "elite controllers." What is an elite controller? It's someone with HIV who has never had a detectable viral load, although they have never taken HIV meds. She also has an astonishingly high CD4 count and has never experienced any adverse health effects from HIV. Loreen considers it her responsibility as an elite controller to help other people with HIV, which is why she's currently participating in three clinical studies in which researchers are trying to understand how people like Loreen actually control the virus. In fact, she's created a new organization for people like her called the Zephyr Foundation.

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